Thyroid UK
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Help please!

Hi, I live in France and for the past 15 months have been taking Levothyroxine, the reason for my taking this is that during an ultrasound scan for another problem nodules were found on my thyroid, 2 of which were quite large. My GP after consulting an endocrinologist prescribed levo 50mg/day with a view that it would shut down my thyroid and inturn the administered dose would reduce the size of the nodules. This has worked, however, about 3 months ago I went to the pharmacy and they have given me a 'new' type of levothyroxine. It is still made by the same lab but they have chaged an ingredient, taken out lactose and submitted mannitol, most people i know in France have suffered side effects because of the change and all sorts of court cases are now being pursued. My problem is that I have expereinced pins and needles in my hands, and my hair which was once thick and healthy, is now very, very thin, and doesn't appear to grow. It is now 5 months since I had it cut and it has hardly grown in that time! Please can you help me, I know I live in France, but feel quite desperate and alone at the moment.... At the last blood test which was in August, my tsh level was 0.52 (N 0.25-4.70), she was pleased with this and just told me to continue with 50mg/day. I am due for another full blood test in January. I have managed to get some 'old formula levothyroxine' from Germany and have just started taking that, in the hopes that it will stop the hair thinning/loss and the pins and needles in my hands. At the moment, it is impossible to buy the old style levo in France, and a lot of people are getting it from either Germany, Spain or Portugal. I would be very interested to hear what you think and for any help with hairloss, I know it makes me sound vain, I really am not, but my confidence is beginning to suffer now, and I'm feeling really low. Thank you.

4 Replies
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Welcome to our forum and am sorry you have hypothyroidism.

We have members from all over the world. It is not exclusive the UK. Unfortunately that means that worldwide we are subject to the same diagnosis and thyroid hormone replacements.

I am also sorry their has been a change in the formulae of your levothyroxine. Small changes in this can cause big changes in our health.

Hair loss is is a big challenge for many who are hypothyroid.

Details of where to source prescription medication is forbidden on the open forum.

If members can help at all they will send you a private message and a red dot will appear above the bell on the top line.

I will close your post so no information will be be given by mistake on the forum but you will be able to get private messages.

50mcg of levothyroxine is a starting dose but many doctors or endocrinologist do not increase by 25mcg every six weeks until your TSH is 1 or lower.

The most important hormone tests for us, which give us far more information is a Free T4 and Free T3 blood test and I'll give a link which will show the reason why.

Unfotunately, it seems - worldwide - that we are treated exactly the same and many remain very unwell whilst being told our bloods are 'normal' 'fine' or o.k. when we feel anything but.

The purpose of taking thyroid hormones (and I am certain few doctors/endocrinologists are aware of this is to have sufficient T3 to go into all our T3 receptor cells. T4 (levothyroxine) is a prohormone (or inactive) and it has to convert to T3 (liothryonine). It is T3 alone which is required in our millions of T3 receptor cells.

When you have a blood test it has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards. This keeps the TSH (thyroid stimulating hormone is from the pituitary gland) at its highest and may prevent a dose being unnecessarily lowered.

Ask for B12, Vit D, iron, ferritin and folate too, as well as Free T4 and Free T3 when you have your next blood tests.

Always get a print-out and post for responses from members.

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Some links for you and we have to read, learn and ask questions if we are to recover our health. It is not a quick journey unfortunately.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

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Pompadour,

I thought that Merck had been instructed to source the old formula Levothyrox as the new formula was causing such difficulty.

There are some posts in the link below re the new forumula Levothyrox healthunlocked.com/search/l... and a Google search should give you updates.

Hopefully your symptoms will improve now you've sourced the old formula.

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Thank you for your reply, as far as i'm aware, the old formula is not available in France anywhere unless you are one of the ones taking Merck to court and you have a letter from your Advocat, but even in this case, people are being told with the letter that no one is being allowed the old formula. It's all such a mess and no one will admit to it.

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